Anywhere is Walking Distance if you have the Time

Samuel Johnson said that a little ease is the ruin of great men. This is a fact of nature. Nature strives to be efficient, the most return for the least effort. When one is struggling to survive it is the most sensible path to follow.

Fast forward out of the Neolithic and such hard scrabble existence was not part of my life growing up in the twentieth century. I was not rich, but white middle-class was close enough. I had learned to get by on minimum effort.

When I awoke out of a coma with a severe brain injury everything had changed. I had to learn to walk, talk, read and write, basically everything, all over again. Only this time everything was harder. Much harder. Nothing came easy. I found myself at the proverbial crossroads. Do I give up and accept my lot, or do I push on?

The choice may seem obvious when you see where I am today. I've been happily married for over 25 years. I have worked satisfactorily for 23 years in a factory and have now retired to pursue more fulfilling work as a wedding officiant and writer/speaker. I have a wide circle of friends and an extensive list of awards and accolades. In a word, I have thrived.

When I was in the hospital I had no idea what brain injury recovery involved or how long it would take (essentially a lifetime). Had I foreseen what would be required I would have blanched and quailed. In fact, it was really about two years later, when I reached a plateau, that I became clinically depressed. It was then that I realized that I had to accept that I wasn't going to breeze through my recovery like a wunderkind and that I was going to be “brain injured” forever.

That was when I decided I didn't want to live the rest of my life half lived. I did not want to live a half-life. I wanted to live a full life. This is the time when many would say that they “pulled themselves up by their own bootstraps.” If anyone thinks that’s possible, I want you to reach down right now and pull with all your might. Yeah, it can’t be done. If anyone tells me that’s what they have done, I eye them suspiciously.

The first help I needed was with my depression, which took a few months of therapy and about a year of anti-depressants. The second thing I needed was a support structure; friends and family who believed in me and supported me. Then, with all that in place, I was ready to do the (seemingly) impossible.

I had an overwhelming list of issues and deficits. I chose the one that bothered me most, thinking that if I could at least do that I could maybe keep on going. For me that was walking and being in good shape. I had to have the energy to climb the mountains before me.

I started walking every day. Soon I was running a little bit of the way, kind of a lope, really. My balance and partial paralysis (left side) made running difficult. I kept it up and ten years later I ran a ten mile race in 92 minutes.

A couple years after my accident I saw a video tape of myself at my birthday party. I was shocked at how poorly I spoke! I had always been well spoken and I was not aware that this was no longer the case. This had to change.

I remembered in German class in school how good it felt to leave the class and be able to switch back to English where I could pronounce things easily and that finding the words I wanted to say was easy and effortless. I wanted that feeling again, so I started studying German, not to learn the language, as my memory issues made that a quixotic quest, but to make English seem easier. I was cross training for speech! Eventually, I switched to Finnish because that language is really difficult for English speakers to pronounce. After a few years of studying Finnish for about 15 minutes a day people began telling me I didn’t sound like I had a problem speaking.

Speech has never become easy for me, not like it once was. I still slur and get confused when I am tired (basically, by evening), but for a part of each day I can speak well.

The thing was, absolutely everything was hard to do. Since everything was hard it didn’t matter what was on my plate, it was a challenge. Nothing was too hard. I had learned to walk, I had learned to speak. I could do anything if I just put it in a routine and chiseled away at it. This is the secret to my success. Much of that time didn't feel like thriving, it is when I look back that I can say, “I have thrived.”

"You Disappear" a book review

For a bit of thematic synchronicity, this review is here but not here. If you scroll over and highlight the blocks of text the review will appear. Not my original intent, but that's how it worked out and at the suggestion of friends, I'm keeping it.

Christian Jungersen set out to overcome a number of literary challenges that few other authors would have attempted, and with You Disappear he deftly handles them them brilliantly. First, he writes a book from the perspective of a convincing female main character. Second, he writes on a suite of subjects that require an intimate understanding of broad range of current research, namely brain trauma and it's many psychological aberrations, which is saturated in enigmas with feintly understood ramifications. Third, from the bowels of deeply conflicting social, medical, and political issues he must wrest forth a lively and entertaining story. In each instance he has unequivocally succeeded.

I have read many accounts of brain injury recovery in the last twenty-five years since my own severe brain trauma. The accounts of the slow and heartbreaking recovery from brain injury are at best tedious and draining to read. Jungersen has crafted a story that is a page turner. Among the plodding metronome of brain injury recovery he has woven a symphony of plot twists that are as unexpected as they are believable. Quiet moments of beauty and gentle humor mix with the character Mia's discovery of what it means to be brain injured. Her fugues of hope and despair culminate in a resolution that is as satisfying and complete as it is unexpected.

There are many villains and many heroes and they exchange places within each character. Each of the main characters is a fully realized believable person that changes and grows throughout the story. So many other fictional stories of brain trauma focus on long term memory loss and little else, those are easy stories to write, even though such amnesia is incredibly rare. Jungersen, on the other hand, tells an engaging story that embraces the full spectrum of brain injury symptomatic sequelae by unpeeling the onion of mystery and misconception, rather than just listing the symptoms like ingredients. I found myself crying, "Yes, yes, yes! That's exactly it!"

Finally, as a reader with letters in literature, I was also enthralled by the sophistication the work demonstrated in its employment of a narrator that may be, or may not be, reliable. The confidence the reader places in the narrative vehicle can subtly alter the interpretation of the events as they are related. The mind wants to place black hats on the bad guys and white hats on the good guys, but such verity is elusive. The story, like brain injury itself, is different for every individual.

Jungersen has set a new standard for excellence.

Brain Injured, Brain Damaged?

It used to be, years ago, that those who had disabilities or were different in some way, were categorized and named in ways that were insensitive, if not downright cruel and hurtful. Gimp, cripple, harelip, lung (for TB sufferers), and many more terms too improper to bother printing. Fortunately, that was then and this is now.

            These days there are forums and other vehicles to discuss how these individuals would like to be called. In these modern days we have an avenue to make it known how we would like to be referred to in public. The internet allows for many voices to be heard. It is important that those affected get involved or the terms chosen are still liable to be inappropriate or offend.

            The latest best term for those have suffered a brain injury is "person with a brain injury." This is preferable to 'brain injured person' because the emphasis should be on the person, not the condition. The popular term "survivor" has problems because it is too general. People survive a lot of things, someone whose cancer is in remission is also called a survivor. We also need to avoid creating an overly technical term like neurophysiometrically compromised, we don't want to obfuscate brain injury the way I just did with this sentence, by using a word like obfuscate.

            I've been giving the term "brain damaged" some thought. Although "brain damaged" is technically accurate, it implies a permanent state, which of course it most emphatically should not be viewed as. And yet at the same time, brain injury is forever. I'm not ever going to be "not brain injured." Perhaps it is more accurate to say that "brain injury" is an experience, "brain damaged" is a state. The two are not incompatible, yet they are apples and oranges.

            Similarly, imagine if you had a broken leg. Strictly speaking you are "leg damaged." Yet, no one ever says that. Some still have an occasional limp that they will refer to as "an old leg injury from a car accident." Maybe next time when I have trouble word finding or following directions I'll explain it by saying "My old brain injury is acting up again."

            The phrase "person with a brain injury" is more descriptive of an experience than a condition. When a person's injury is relatively new they may justifiably resist this label as their intention is to re-cover from it. That is why they go to re-hab. If they are lucky, they may re-gain their former pre-injured state of being. That is a really cool thing, if it happens to be your lot you lucky duck. For the rest of us the journey is different. Once you experience something that changes your life you can never go back and "un-experience" it. Just like you can never un-mix the chocolate powder you just mixed into your milk to make hot cocoa.

            Nobody that has a brain injury wants to have another. Although statistically, if you have a brain injury, you are much more likely to suffer another, that is not from any personal desire. However, those who have lived through something like that tend to feel they are better for having made it. Basic training in the military is something that is challenging and unpleasant, and yet anyone who has gone through it will be proud of the fact they did it.

            Which leads me to the final conclusion for which I'm proud, inwardly, for having gone through what I have gone through. Other things, even if they are more difficult to do now because of my brain injury, I don't shy from doing. I am not a better person because of my brain injury, but I am because of what I've done in spite of my having a brain injury. I wouldn't choose to be this way, but as best as I can remember, no one ever asked. The fact is, I suffered a severe brain injury in 1989. Ever since then I have been crawling and struggling, fighting and groaning for every inch, to get to where I am today. And I smile, sometimes I smile through my tears, but I smile. I am here, and that is my victory.

The Infinite Strength of Compassion

            Caregivers often say that they wish they could switch places with the victims. They often feel like there is not enough they can do to really help the victim of a Traumatic Brain Injury, they feel as if all their effort is for naught. Conversely, I am at times thankful that the accident happened to me and not my wife. I couldn't bear to see her with a brain injury and I know I would be tormented by the desire to have had it happen to me and not her.

            So that is the attitude I take. I choose to believe that this accident was meant for her and I said, "No, let it be me." Immediately the question of why this happened to me is clear. Rather than feeling sorry for myself, I stand proud and strong. No longer am I the victim of a terrible fate; shouldering a burden that I shouldn't have to. I have metaphysically lifted the heavy load carried by another and made it my own. I have found the infinite strength of compassion.

            Another, perhaps better way to think of this, is not to imagine a single person you know, rather think of the probability of somebody getting a brain injury. There are going to be a certain amount of brain injuries suffered by a certain amount of people. It has to happen to somebody. Am I so cavalier as to say it should have happened to someone else? Of course not! As terrible as brain injury is, I would never wish it on another. So if I were to wish it didn't happen to me, it would be like I am wishing it had happened to someone else.

            My wish has come true. Someone was going to suffer a brain injury and I said, "No, let it be me."

Digesting Grief

Samuel Johnson, the eighteenth century lexicographer, considered by some to be the greatest English mind of his time, made a very astute observation on grief. He said “While grief is fresh, every attempt to divert only irritates. You must wait ‘til grief be digested, and then amusement will dissipate the remains of it.”

Those of us with brain injuries know this very well. The last thing we want, or need to hear, is one of those trite phrases which we all have heard like, “Well, you’re lucky to be alive” or “You think you’ve got it bad…” or worst of all “I know how you feel.” These genuine attempts at soothing our nerves come from the feeling that they need to say something; something positive and uplifting. As though we’d just turn our heads and say, “My God, you’re right! What business do I have to grieve? Thank you!” and then we’d go walking away whistling Zippety Dooh Dah. Of course, our friends and family members are only trying to offer solace; we certainly don’t need berate them. My point is that people don’t have any generally accepted and useful way of responding to grief.

The most helpful thing for them to do is to acknowledge your grief and share it with you as best they can. As Nietzsche observed, “sharing joy increases it, and sharing grief decreases it.” Unfortunately, very few people know of Doctor Johnson’s quote and few spend their time pondering how to respond to tragedy which is why Nietzsche’s observation is so sagacious.

What all this is leading up to is the fact that the only path past grief is to digest it. We need to accept our situation as bad and just feel it. Trying to ignore it or look at the bright side is not going to let it pass, nor is farming it out and trying to figure out a solution by rolling it over again and again in our minds.

In most situations, one can only grieve for so long and our natural human response is to tire of the grief and move on. It is at that point that the bright words and encouragement, the numerous offered diversions can help us to finally get over it.

The tough part about brain injury is that you can’t put it behind you. Yeah, if it were going to be over tomorrow we’d be through grieving soon enough, but there it is; every day the same as before. It is similar to when somebody has a loved one who remains in a coma, they can’t grieve their passing because they haven’t passed, and yet they aren’t really here either, so they are stuck in between, waiting.

That’s where I was, and would still be, waiting to be better before I could move on. I would always be waiting to get better. I was like the person who says, “I’ll be happy as soon as I win the lottery.” I had made this agreement to be happy once I met an unlikely, if not impossible, condition. Ultimately, I decided that was not how I was going to live my life, waiting for the day I would wake up and not be brain injured anymore.

That was the first day I began living again after my accident.

It's Always A Balancing Act

   Don't see me as "different," but understand I have a brain injury.

   Treat me as you would anyone else; like me, even love me, I have the same basic needs, being human, as anyone else.

   Of course, people can't understand what it is like to have a brain injury. No, not even close. Brain injury has so many profound and different effects that it would take a long time and effort to come to some sort of appreciation and people do have other things to do, like eat, work, and sleep.

   So I have to make the effort, as unfair as it is, I am the one that is different. I must be the one to reach out. It is as if I were the only one who spoke my language, it is not everyone else's job to learn my language, but it is my job to learn speak to everyone else. After all, they have plenty of people to speak to without speaking to me. I however, need to speak to someone.

   I don't want people to associate with me just because they have to, that's what counselors and therapists are for. I want folks to be my friends because that's what they want most from me.

   I have to do what I can to be of value to them. People will be my friend if they like who they are when they are with me. They will like who they are around me if they feel like I like them for who they are, not just what they can do for me.

   This is sometimes hard to focus on. My primary goal is to find friends because I need them. However, if that is the attitude I hold foremost in my mind I will push good people away. People can easily detect needy grasping types of folks, and they will rightfully avoid them. I need to smile and ask them how they are doing, how their day is going.

   There are so many memes, quotes, and moral platitudes about how friendship is about being there, being strong for the other person, and offering them unconditional acceptance and love. Yes, that is all part of it.        But it is what comes after the first part of friendship, the part where people enjoy each other’s company and have an enjoyable time in their presence.

   It is enjoyable to be around people who genuinely like you.

   If I focus on liking people and taking real delight in their world, their comings and goings, their pet projects, their family and friends, then I find that they enjoy my company as well. If they are quality people they will respond in kind without being asked. If I find they are not quality people then I can simply move on. No big drama is needed, no final closure. I just let them slip away as I meet other people.

   Meeting people is a numbers game. Hang out in public spaces, be friendly warm and open. I say this like it is a simple prescription, but it is not. For most of us it is hard to open up to strangers. I may write well, but when it comes to extemporaneous speech, small talk to strangers, I find it very difficult and often I become tongue tied. Through all my pitfalls and hang ups I have managed to find good friends over the years in spite of myself.

   I am trying something new with this article. I am not weaving “because I am brain injured” into every sentence. Still, if it makes it seem more pertinent to you, go ahead and sprinkle the phrase liberally throughout. I find that as much as brain injury separates me from others, it doesn’t separate me as much as I feel it does. When I say I have a bad memory, everybody responds that they have a bad memory too.              Rather than snap back and tell them they have no idea what it really means to have a bad memory, I just smile and use the moment to build a bridge to another human. I commiserate, usually with a wry laugh. I look at them and say, “It sure adds a special quality to the day, doesn’t it?” I invite them in, I don’t push them away.

   I write this because it helps me to organize and focus my identity. It helps me formalize what it means to be me. I strongly recommend that others put their thoughts into written words. I often imagine myself doing or saying things, but when I write these things down they become much more real. Good behaviors and practices don’t just float around in my mind, dissipating with the next breeze of thought; by writing them down they gain structure and mass. If I think of my thoughts as a building I am constructing, the act of writing is the critical diagonal piece that forms the triangle that gives stability to the whole structure.

Mom's Dreams

Mom’s Dreams

 

            My mom is great, I love my mom. I mean C’mon, who doesn’t love their mom? Here you can insert all the clichés that everyone says about their mom, and they all apply to my mom. And like most people, I really don’t believe I deserved all she sacrificed and gave for me.

One of the things I love about my mom is she has always been a dreamer. It’s like she and my stepfather were these old vaudeville actors and they had this tired old bit, talking about their dreams, that they trotted out every show like it was fresh and new. All you could really do is watch the show and smile and nod and be as sincerely interested as you could fake being.

My mom is almost seventy-five years old and you know what she did this spring? She planted an orchard! A pecan orchard or something. She’s imagining in a few years she will stroll along the orchard lanes with a basket harvesting pecans, or whatever she’s growing in her orchard. In five years she’ll be almost eighty! But that’s my mom.

I was in junior high when she married my step-father. They are a match made in heaven. No truly, they are. There is no way that two people who both live on dreams should live in the real world. This mundane world has no place for them. They keep toiling on life’s lower rungs, but they’re happy, very happy. Just up around the next bend the rainbow is going to open up and cast its gold their way.

Like I say, I was in junior high when I first heard their dreams, and I believed them, every word. By the time I was sixteen I was beginning to wonder when this was all supposed to happen. By the time I was eighteen I knew it was never ever going to happen. They didn’t have the business sense to make a million dollars, so they had to rely on dreams instead. For most this would be a poor trade, but it worked for them.

I think deep down they didn’t want the dreams to come true, that wasn’t what their dreams were for. They understood the joy was in the wanting, not the possessing, and they were rich in want. Usually, folks burn out on the wanting and give up their dreaming. Not my folks, not my mom. Wants were her wants. Her dreams never stopped feeding her.

My wife and I are more pragmatic. My wife is much more pragmatic. I just accepted that that was how my mom operated, but it would just drive my wife up the wall. “How can they be so silly?” As if there was an answer why puppies and kitties were so cute. They just are.

So when the time came, when I was lying in a coma in the hospital, and the doctors were advising my family to start looking into long term care facilities, that I saw the value in my mom’s dreams. My young fiancé had a white knuckle grip on the hope that the nightmare would end and I would be okay. Everybody, absolutely everybody, was advising her that she should make a quiet exit. No one believed I would be anything more than a vegetable. In fact, vegetable was too optimistic, I was destined to be parsley, simply brushed aside as a useless annoyance in the meal of life.

Except my mom. As I lay dying, “Mike is going to be alright. You watch, he’ll come through this better than ever.” And my then fiancé, now my wife, always the pragmatic practical one, chose that one time to believe my mom’s dream talk--and that one single solitary time my mom’s dream was spot on. If she has lived her whole life on dreams and scant else, just so that she could be the one to say I’d be okay that one time, and give Linda a foundation of hope to build her own dream on, then I say humbly, thank you, mom.

A Haunting Now

I walk into the front room to put on my shoes as I look forward to meeting my friends John, Tim, and Howard, at the Daily Grind Espresso Bar and Coffee Shop. On Saturday mornings it is my regular haunt and we do the New York Times Saturday crossword puzzle. Sure, we could each do it alone, and probably faster, but then we’d miss the camaraderie and jocose cajolery that makes the morning bright.

As I reach for my shoes I notice the folder and textbook for my Thursday writing class sitting on the table by the door. I reorient myself, “That’s right, it’s Thursday morning and I have to go to my Creative Writing class.” I chuckle at how airheaded I can be sometimes. I admire myself selfishly in a self-congratulatory manner. I’ve developed this trick for making sure I make it wherever I need to be, and as a fail-safe back-up, to simultaneously bring whatever I need to bring, to wherever I’m going. I put what I need to bring to wherever I’m going next, on the table by the door. I make it a habit to always look at the table to see if anything is there. If something is there, then I know that is what I’m doing next.

This works for me because I don’t have a problem remembering why I put things on the table, but when I am rushing out the door to go someplace, I frequently am thinking about the trip and then I forget what I need to bring. Its primary benefit is to remind me where I am going next. I usually know when I’m supposed to be where, but the “now” is ever changing. I’m trapped in this ‘now’ and the rest of the world hurtles by me. It is like I’m sitting in a train car and can only see to the side, never ahead and never behind. It might seem exhilarating, blithely embracing whatever the ‘now’ hands to you, but it is actually a colossal pain in the ass.

Waah waah, a tragedy. Acknowledge and forge ahead. Today is not that day. Today I have coolly and deftly sidestepped a catastrophe. My scheme has worked, my life is smooth. I hop in my truck and head off to class. As I pull on to the freeway I notice I’m about an hour early, oops, I’m still on coffee shop time. It occurs to me that I have not read the next assignment and I calmly appreciate the serendipitous consequence of air-headedly thinking it was Saturday, I now have time to read the assignment. I also appreciate the 11:30am class time as it allows me to avoid rush hour traffic, which more than just an inconvenience, is unsafe for me as my reaction time isn’t that good. Actually, my reaction time isn’t really that bad, it just takes me longer to process the visual information I’m taking in, but the end result is the same. I smile, that is not a problem I need to worry about this time.

I exit off the freeway and head into downtown Minneapolis. Something isn’t right, is this a holiday, there is almost no traffic? No that can’t be, not on a Thursday. Maybe there was another 911 type event. I can’t handle the distraction of a radio when I drive. Having the radio on, it’s as if someone is sitting beside me tapping my shoulder saying, “Hey! Hey! Hey! So if the Russians attack, I won’t know about it until I see a mushroom cloud. This thought makes me smile as I realize that my Cold War mentality ages me.

I pull into the parking ramp, pay my five bucks and park. Score! I get rock star parking, today is a good day. And then heady realization surges through me like an overpressure wave. Temporal vertigo. This is not Thursday, This is in fact, Saturday. I do not have a writing class on Thursday morning in Minneapolis, I have a Lit class Thursday night in Saint Paul. I had absent mindedly left my homework out last night. The contrast is startling, instantly I have gone from mastery of my world, to the victim of a harlequin’s mad dream. “No!” I scream silently, “not again, not still, this is so hard and I am so tired. I don’t want to be brain injured anymore.” Supplication admits of no absolution, and reality is such a fickle whore. “Why does this have to be my reality? I want the one I had when I left the house. Why don’t I get to keep THAT reality?”

“Because an easy life is worth what you pay for it.”

“Go to Hell.” I hate being me sometimes.

April Fool's

 

            April Fool's day is very stressful for me. It is hard enough to follow what people are saying. Oftentimes I find myself stretching to grasp where people are coming from when the say something to me. Very often things don't quite make sense or seem right.

            And then you get a day where people are purposely trying to catch one another off their guard.

"Did you hear we're supposed to get a foot of snow today?"

"Really!?"

"April Fools!"

            Ordinarily that's just good fun, but when a person with a brain injury is the victim it can be quite mean. Everybody feels like a fool when they fall for something like that, and the joker feels quite clever to have put one over on somebody. But it is a painful reminder to a person with a brain injury that they have problems with processing information. Sure, it can happen to anybody, that's the spirit of the April Fools holiday, but for a person with a brain injury everyday seems like that and to have a day that is specifically meant to do that fills them with dread.

            So, if you don't have a brain injury, imagine this; What if every day was like April Fool's Day? What if every conversation you were in had the potential of ending in a "Gotcha!" Imagine how that would fill your day with trepidation. You have to admit that it would get quite tiresome. On April first it is hard for anyone to keep up their guard, sooner or later somebody is going to yell, "April Fool's!" and they will be caught. If it happens too often it gets very tiresome very quickly.

            That's what brain injury is like every day. Except people aren't even trying to pull one over on you, it just feels like it. They might as well yell, April Fool's life!"

The Forty-Seven Percent Rule

There is an old joke that goes, "Forty-seven percent of all statistics are meaningless." I've always enjoyed the sub textual humor of that. Now when somebody, like my employer for instance, wants to know my exact limitations I will tell them, with respect to a certain task that I happen to find difficult because of my brain injury, I can do that forty-seven percent of the time.

I look them square in the eye and say it with all earnest, as though I have kept a record with carefully calculated results, and I am recalling the exact number from memory, which is in and of itself ludicrous, as I have a brain injury. It is also ludicrous to try and describe my very real limitations from brain injury in black and white. So I tell them I can do it forty-seven percent of the time.

This is a very specific number to illustrate the absurdity of the question. First I start with the basic fifty percent "sometimes I can" "Sometimes I can't." Then I trend downward for Murphy's law. This is the law that says when it is really important I probably won't be able to do it, but still almost even. Forty-nine and forty-eight are too easy round up to fifty so I have to dip a little lower. This leaves forty-seven because at forty-six and below I start sounding like I mostly can't do something, and that's not the way I look at the world.

            On days that I'm feeling immortal I go for the polar opposite 'fifty-three percent,' which says that I can usually get it right, but since this whole discussion usually comes up when I'm trying to illustrate that I do, in fact, have a brain injury, that does, in fact, hamper my day, I usually go with the downward slope to forty-seven.

No one survives a brain injury

 

                I was reading a really excellent account of a man's recovery from a severe brain injury he suffered in a bike accident, written by his wife. I find it interesting to read accounts by care-givers as it is the other side of the coin from my experience and it allows me to gain insights that I otherwise might miss. The book is called Learning by Accident and it is written by Rosemary Rawlins.

                At one point she is mentioning hearing the phrase, which we all have heard so many times, "He's lucky to have survived!" I won't go into her own thoughts about that as that is her story, but it got me thinking about that.  When somebody says to me that I am lucky to have survived I usually nod and agree, because that is polite, but it starts this internal dialogue:

Am I?

I did die, yet here I am.

I wouldn't say I almost died, I'd say I almost lived.

I had a near-life experience.

It was like I had a stare-down with Death and he blinked. If I ever write an autobiography I'll probably call it, Death Blinked.

Death's Scythe missed me by that much! Said in my best Maxwell Smart impersonation.

And of course, there is my old favorite, "Lucky sure sucks!"

                The point is, I'm not who I was. I won't say I'm better or I'm worse, those are relative terms and don't really address the issue that I am concerned with in this case. I was baptized by a gravel hauling Mack truck of a St. Peter while I was wearing an F-150 pick-up truck robe. It washed away my past and left me spiritually cleansed. I am different, I am not who I was.

                Nevertheless, I bear a striking resemblance to my former self. I impersonate him all the time. I feel like an intruder who has snuck in and lives in his house and sleeps with his wife. Back in 1989 when this happened I felt like I was trying to impersonate this guy who had a dream life. A beautiful house, a more beautiful wife who loved him unconditionally, a good job and good friends; and it was all mine, if I could just keep the charade going. However, that was turning out to be a trick that made learning to walk seem easy (learning to walk is my description of the hardest thing I ever had to do).

                I live a double life, but with a twist on the conventional meaning. This double life is not lived simultaneously, but rather in serial. Instead of trying to conceal one life lived from another, I'm trying to join two lives, one after the other, seamlessly. That is a fiction that cannot be done. The only way I have found to cope is to acknowledge the past as the past, and move on. The A team that was running my life has been knocked out of the game. In its place I am now the B squad; the second string. The game-my life-still goes on.  The odds makers have reset the numbers. I can still do really well, only now it always has a qualifier; I can do really well...considering.

Please return to paragraph two and read it again.

The Forty Seven Percent Rule

There is an old joke that goes, "Forty-seven percent of all statistics are meaningless." I've always enjoyed the sub textual humor of that. Now when somebody, like my employer for instance, wants to know my exact limitations I will tell them, with respect to a certain task that I happen to find difficult because of my brain injury, I can do that forty-seven percent of the time.

I look them square in the eye and say it with all earnest, as though I have kept a record with carefully calculated results, and I am recalling the exact number from memory, which is in and of itself ludicrous, as I have a brain injury. It is also ludicrous to try and describe my very real limitations from brain injury in black and white. So I tell them I can do it forty-seven percent of the time.

This is a very specific number to illustrate the absurdity of the question. First I start with the basic fifty percent "sometimes I can" "Sometimes I can't." Then I trend downward for Murphy's law. This is the law that says when it is really important I probably won't be able to do it, but still almost even. Forty-nine and forty-eight are too easy round up to fifty so I have to dip a little lower. This leaves forty-seven because at forty-six and below I start sounding like I mostly can't do something, and that's not the way I look at the world.

            On days that I'm feeling immortal I go for the polar opposite 'fifty-three percent,' which says that I can usually get it right, but since this whole discussion usually comes up when I'm trying to illustrate that I do, in fact, have a brain injury, that does, in fact, hamper my day, I usually go with the downward slope to forty-seven.

Learning to See

I see the world differently now. I see it with “TBI Vision.” I’m not talking about my double vision, or the difficulty my brain has in processing the information my eyes are taking in. Those are very real and serious limitations. What I am talking about is the way I see things now.

All too often, ordinary people get caught up in what they see. They place too much emphasis on what is plainly right before their eyes. If something doesn’t square with the facts then it must not be so. “A is A” as Aristotle said. “Ding an Sich” (a thing in itself) as Kant said. Time and again it is repeated that we gain knowledge of our world through direct observation. None of these beliefs allow for brain injury, where that information is confused, obfuscated, or just plain missed.

This would seem to imply that a brain-injured person is less able to operate effectively in the world. In many cases this is just not so. Blind people can operate effectively, as we know. In fact, many blind people who get their sight are unhappy with what they see; the “real world” is not a world they are comfortable in.

This is an insight into what I mean when I say that I am glad for my TBI and would not wish it away even if I could. I see so much more with my heart and I would not want to give that up. I use to see the world in very cold and hostile terms. Now I see it in warmer friendlier terms. Has the world changed? No, I have. Instead of only seeing what is, I also see what can be.

It was a long and arduous process to come to this knowing. Now that I have it I would not give it up. This is what I mean when I say that I am glad to have sustained a severe TBI. All the pressure is off. No one expects me to be the best, or the smartest, or the richest. All I have to do is be the best me I can be. I can be a good friend, a good volunteer, and a valued person.

I live my life with passion. I care. I laugh. I love. All of these are things that I gain by sharing them; they make me a wealthy soul. Because I want these things in my life (and who does not), I give them away. They rebound back to me. I like myself when I am this way, when I like myself I find others like me also. I ask no one for compassion, joy, or love. I simply give it unconditionally and I find my own cup overflowing.

This is how I choose to see the world; this is my “TBI vision.”  

 

That was my original essay written some time ago, today I would add that, Like Voltaire's Candide,  when I am harangued by folks who wish me to dive into this cause or that problem, this hangup or that philosohy, I say to them, "That is all very well, but lets tend to our garden." Our garden is a metaphor for our life, the only thing worth growing in it is love and respect. If we tend to those two crops we will have a full life.

Consuming the Rage

When I was in the hospital, when the time had passed and it finally occurred to me just what I had lost, That was when the rage theatened to consume me.

Gone, it was all gone. Everything that had made up what I considered the best part of me, everything that was my reason for living, was just gone. I remained, seemingly only to bear witness to the fact that I was gone.

Betrayed! I was betrayed by life and fate. I was berthed and burdened by fate. I became my rage and I became my betrayal. The hatred blackened my heart until I could feel it no more. And then I reached a point where I had absolutely no capacity for any more hatred.

My hatred had burned white hot as it concentrated within me. My whole universe of anger focused to a point so intense that it exploded out from my very core. It washed over me and it flooded my hospital room. It knocked everything off the tables and buried them against the wall. Then it burned the paint off the wall and exploded out the window. I was left laying still and empty and weak in my bed.

As suddenly as it exploded, it was gone. Empty, bereft, and alone, I lay there, and I surrendered. I could not take it anymore. I had no more capacity for hatred. It was like my great lungs of hatred were emptied and I drew in a deep sweet breath of grace.

If forgave myself, then I could forgive fate, and then I could forgive everyone. What else could I do?

In surrender, I had found Epic Grace.

Brain Injury and Marriage

            Relationships and marriage can be difficult for anybody, which means with brain injury they can be exceptionally tough. I was engaged to be married at the time of my accident in January of 1989. After I came out of my coma we had to decide whether or not to continue with our June wedding as planned and risk forfeiting our deposits, or to put it off for another year.

            Against the advice of many, we decided to go for it. All my wife had to do was work full time, pay the bills, and plan a wedding for two hundred, as well as take care of me. I had to learn how to walk so I could make it down the aisle. In the end I did my part and my wife did hers.

            That was the easy part. Most relationships don’t make it past a brain injury. Brain injury can fundamentally alter who you are. A common lament in many troubled marriages is that one’s spouse is no longer the person one fell in love with. Brain injury pretty much assures that fact. After over 20 years of marriage I can give you some hints as to what you can expect.

                        If you marry a brain injured person you may feel like you have to do everything. You have to support the household because your spouse may not be able to earn a significant income. Fatigue is a major component of brain injury so you may have to do a lot of the work around the house and yard. Your spouse may no longer be able to do mechanical repairs or cook, and if they try do some of the things they could do before, it can have disastrous results. There are no clear boundaries, which means, you are perpetually walking on a mine field.

            At first, and for the foreseeable future, you are going to feel like you gained a child, not a spouse. No adult wants to be treated like a child, and no adult wants to admit they need to be treated like a child. Nevertheless, with brain injury that is a fact of life. A brain injury survivor needs to admit they need help and their spouse needs to admit that an adult is not going to enjoy being taken care of like a child. The lines of tension are set very taut and very ambiguous.

            On the off hand chance your marriage lasts long enough, there is yet another hurdle. Supposing a brain injury survivor gains the ability to function more or less like a competent adult, a process which can take years, the marriage must once again adjust to shifting roles. This doesn’t happen all at once either. Just like that troubled part of life we call adolescence, returning to the role of co-equal partner is an awkward process of fits and starts. All the boundaries can change and there is no set or certain rhythm along the way. One hopes that after everything else, the marriage can make this adjustment.

            At this point in my essay you are probably asking “is it worth it?” I will tell you in all honesty, probably not. I say this because I don’t want to fill anyone’s head with all sorts of unrealistic hopes. I don’t believe that soul mates are found, I believe they are made after years of effort. I believe one of the reasons so many marriages fail today is that we listen to all these love songs that place unrealistic expectations on a relationship in which things like fellowship and respect and good communication are just supposed to happen. The love song that I do believe in is one by RUSH called “Ghost of a Chance” and it starts out like this:

“I don’t believe in destiny or the guiding hand of fate

I don’t believe in forever or in love as a mystical state

I don’t believe in the stars or the planets or angels watching from above

But I believe there’s a ghost of a chance that we can find some one to love

And make it last”

I have a wonderful marriage; my wife and I are very much in love, but it hasn’t been easy and I certainly don’t want to say, “Hey, we did it, you can too!” For us it has been worth it, but it has meant a lot of pain and regret as well as happiness. It is possible; it’s just not easy; which can be said of marriage in general, only with brain injury it is more so.

The First Time I Walked

Imagine my fiance, 25 and very beautiful, quick, curious, and playful. She was engaged to her soulmate and they were to be married in June. Her life was pregnant with possibility.

Then her soulmate was in a tragic accident. At first it didn't seem likely he'd live, then it was assumed if he ever came out of his coma he'd likely be in a very low functioning state, needing constant care, living in a nursing home for the rest of his life. His own family was telling her they'd understand if she left and got on with her life, in fact they were telling her to move on with her life. But she said, "no, that won't be necessary, Mike will get better."

As I lay there in my hospital bed, I couldn't believe that my child hood sweetheart was actually with me and planning to mary me. I felt more than a debt, I felt gratitude and thankfulness of the deepest most intimate kind. If I loved her I would be a partner to her, not a burden. The best way I could show her this was to walk down the aisle with her in June. It was February and I was still unable to walk without assistance or supports.

I decided that if I loved her, then I could walk. I made my walking a metaphor for my love. With each step being a metaphor for telling her, "I love you." I couldn't tell her with words, my speech was so poor at that point.

The day came, they took me down to the rehab room and wheeled me in front of the parallel bars. I stared at them trying to overcome my fear of failure. My therapist told me, "Give it a try, its okay if you can't." She began to say we could try again tomorrow, but I cut her off."

"No it is not!" I mumbled, feeling quite pathetic. I reached for the bars and I tried gallantly to pull myself up. I didn't know it would seem so impossible, but I thought of my fiance, I felt my love, I winced and I strained and with shakey uncertain legs I stood. Everyone in the therapy room cheered. I paused, gathered my strength and set my intentions. I shifted my wait to my left leg, the one that felt heavy with water. I tried raising my right leg to bring it forward. I panicked and set it quickly back down. Sweat was on my forehead and my teeth were clenched tightly. I set my intentions. I tried again, I felt like a skyscraper leaning in the wind, I thought of a sailing ship foundering in a gale, I closed my eyes on the inhale and opened them as I exhaled and took a step.

"I love you." The inner monologue resonated from my heart. I had done it! I had taken my first step.

Now I was in a jam. I had one foot forward and felt very off balance. Now everybody was watching, no cheers, just stunned silence. I rocked back and forth from foot to foot, trying to find a stable platform. There was no avail. Fear gripped me, I clenched my teeth as my breath coarsed sharp and short between them. I leaned forward and dragged my left foot ahead.

"I...Love....You! I had done it, I had walked! I wanted to raise both my hands over my head but no sooner had I tried then I started to fall and I brought my hands down and grabbed the rails tightly. White knuckle grip. I leaned on one hand with my hip and bowed my head while I raised the other arm in the air. Victory! And I breathed.

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Loss of Ability

It is a pleasure to do what you're good at. I, like many folks, can't think of anything more boring than accounting, but I have a good friend who enjoys accounting. I asked her how she can enjoy such detailed precise work, it must get really boring. She told me that what she enjoys about it isn't necessarily the work itself, although being so exacting fits in with her character, it is the fact that she is very good at it.

That made sense. I can really see that, because where I work, which is a factory, although the work is repetitive and boring, what people like is doing a job well. They like that others appreciate their effort. Part of my job involves spending part of each day working with a machine which is very fussy. No one likes running it and so they gave it to me to do and I stuck with it and learned all its foibles and tricks. Now I take immense pride in being the person who operates that machine. I like that part of my job.

If I bring this concept to brain injury it becomes immediately obvious what is so depressing for myself and others - I can no longer do things very well. I am not very good at anything I used to be good at and I don't seem to be able to do much of anything else. I used to be able to do many things well; I used to be able to do a few things very well. Now I'm doing handstands because I can tie my shoes. It is a major adjustment.

Sure I'm grateful for what I have, but with that gratitude comes an appreciation for what I have lost, and any loss stings and the greater the loss, the greater the sting.

The Hero Returns

I have died, yet here I am. I am not talking about any near death experience. There was no light to go to, there was no comforting voice welcoming me or telling me to go back. No, I died. The person driving my pick-up truck was killed in the accident. The body that they kept "alive" at the hospital is inhabited by a different person.

            In the classic Hero tale, a person dies or leaves, returns, and is changed. Sometimes this change is subtle, sometimes it is quite profound, but it is quite clear that they are different and not quite of this world in the same sense as everyone else.

            It is also never a trip taken lightly and the passing of the person is mourned, the returning Hero is often times not really accepted because they are so different yet eerily similar.

            That is how I would describe myself after my accident, eerily similar. I am most definitely not the same. With Brain Injury, the twist on the classic Hero's tale is that the new incarnation is not initially superior, far from it! The so called Hero is, in fact, quite dependent and needy. And so, with fits and starts, I began to construct a new me. I did not try and reconstruct the old me, that was not an option. This took a couple of years to realize and come to terms with.

            It was in the act of reconstructing myself that I realized two important things. The first was that I could not be what I was because that would require this new person to not have a brain injury; the notion of "recovery" became quixotic. The second was that I had an opportunity, both rare and unheralded, to become a better person.

            Enter the Hero.

            I had no idea what the Hero would be like. Piece by piece and hurdle by hurdle I reconstructed my identity. I succeeded at things I would never have attempted before, achievements where the effort did not seem commensurate with the result. Things that I would have considered not worth trying. Things that I would have called too hard. Accomplishments where the result, no matter how gratifying, paled in comparison to the willingness to persevere.

            In this process I become not the end but the means to the end. I trade a life for the living of a life. I am this or I am that becomes simply, I am.  The power of 'I am' opens a door to a myriad of bright possibilities. I was static, I am dynamic. I can't always succeed, but I can always try. These are the guiding principles of the Hero.

Cars Like Brains

How many times have I had to explain to people that I am tired? More accurately, how many times have I had to explain why I'm tired or why I can't do something because it makes me too tired? For me this inveriably occurrs not after an episode of physical exertion, people get that, but at other times when it is mental or cognitive exertion that has worn me out.

For me, cognitively taxing activities are those that require my focused concentration, either requiring my mental attention on a specific task, or more commonly, requiring fine motor skills. Sometimes it is a combination, with results not unlike playing a video game at a really challenging level for a long time, leaving one dazed and confused, even disoriented.

The simplest way for me to explain this to somebody is to liken it to a car's engine. When it is in tune it is efficient. As the engine gets out of tune it loses that efficiency. It is hard to start. Moreover, it uses much more fuel to go the same speed as other cars. Eventually, if it is not tuned up it completely quits and it will not run anymore

My brain is the same way. It is very out of tune. If I try and do the same work as other people, my brain uses many more resources to accomplish similar tasks and the result is less. If I don't listen to it, it gets more tired, fatigues at a higher rate, and even shuts down.

One key difference is that a car can just get a tune up, a brain cannot. My brain can heal and recover, but it will never run. Actualkly, it is a lot like the vehicle I was driving when I was t-boned by a semi-truck. They totalled it. It could never be fixed to run like it did before the accident. I lived, but like my truck's engine, my brain will never run like it used to. It runs differently and less efficiently.

I don't dwell on that fact, but I do acknowledge it. I have to acknowledge it because that is the only way I can make my peace with it. Until I acknowledged that my brain was damaged and it would never run like it ran before I could not begin the monumental effort of trying to achieve my new personal best.

My New Superpowers

            I have acquired some new superpowers. Like most superpowers, I acquired them as a result of a mishap. In my case it was not exposure to radiation and or a chemical spill, it was not even X-rays from space or exposure to a meteorite; it was the result of being hit by a semi-truck.

            As is typical, it took a while for me to discover and learn to use my superpowers. Just like in the comics I did not welcome my new superpowers at first. Just like in the comics I hid them and was ashamed of them. I did not want to admit that I was "different."

            My first superpower is that of "Radical Acceptance" or as I call it "Epic Grace." It started when I first accepted my injury, fault became immaterial because it didn't change anything. Once I forgave myself I could forgive the world. Once I forgave the world I could forgive anyone and anything.

            My second superpower is "Unique Perspective." I have died and yet I live. Nothing really seems like a big deal anymore. I have lost everything, anything I have now is a bonus, each day is extra, tacked on beyond what I would have had. I no longer fear death.

            My third superpower is "Indomitable Will." After my brain injury everything became very difficult. There was no easy way to do something. If everything is hard then it doesn't matter what I try, anything can be done. If I can learn to walk, I can run a marathon. If I can learn to talk, I can learn a new language. It is all the same.

            So with this trio of Superpowers I make my way through the day. It not only makes my life easier, it makes life easier for all those around me. These superpowers are special too, as they can only be used for good; no matter what my intent, the result is always positive.